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Equity in access to HIV/AIDS services in Zambia:
The role of social cohesion in HIV prevention and
care
Inauguraldissertation zur
Erlangung der Würde eines Doktors der Philosophie
vorgelegt der
Philosophisch-Naturwissenschaftlichen Fakultät
der Universität Basel
von Sara Gari
aus Valencia, Spanien
Basel, 2014
-
Genehmigt von der Philosophisch-Natuwissenschaftlichen Fakultät
auf Antrag von
Prof. Dr. Marcel Tanner (Fakultätsverantwortlicher), Dr. Sonja
Merten
(Dissertationsleiter) und Prof. Knut Fylkesnes
(Korreferent).
Basel, den 17 September 2013
Prof. Dr. Jörg Schibler
Dekan
-
Ubuntu
‘I am, because we are, and
since we are, therefore I am’
(Mbiti 1970).
In the African context, Ubuntu is the philosophy that
an individual only exist in relation to a community.
This philosophy is based on values of mutuality and
shared humanity.
Where there is Ubuntu there is social cohesion.
-
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Table of contents
Outline of publications
....................................................................................................
i
Summary
........................................................................................................................
iii
Zusammenfassung
.........................................................................................................
ix
Acknowledgments
.........................................................................................................
xv
Acronyms and abbreviations
......................................................................................
xvi
Chapter 1 - Introduction
................................................................................................
1
Chapter 2 - Global epidemiology of HIV
......................................................................
3
2.1 Status of the HIV epidemic
................................................................................
3
2.2 Key drivers of the HIV/AIDS epidemic
............................................................ 6
2.3 Global action to control HIV
...........................................................................
17
2.4 Main challenges in HIV control
.......................................................................
23
Chapter 3 - Zambia at a glance
...................................................................................
31
3.1 Country Background
........................................................................................
31
3.2 Zambia Health
Sector.......................................................................................
34
3.3 Overview of HIV/AIDS epidemics in Zambia
................................................ 35
3.4 National Response against the HIV Epidemic
................................................. 38
3.5 Access to HIV/AIDS services: future challenges
............................................ 39
Chapter 4 - Aims and objectives
..................................................................................
43
Chapter 5 - Conceptual framework
............................................................................
45
5.1 Health seeking behaviour and access to healthcare
......................................... 45
5.2 What is social cohesion?
..................................................................................
46
5.3 Suggested analytical framework
......................................................................
56
Chapter 6 - Methods
.....................................................................................................
59
6.1 Systematic review of the literature
...................................................................
59
6.2 Cross sectional community based survey
........................................................ 61
6.3 Data management and analysis
........................................................................
68
6.4 Ethical considerations
......................................................................................
70
Chapter 7 - Socio-cultural determinants of access to HIV/AIDS
care .................... 73
7.1 Abstract
............................................................................................................
74
7.2 Background
......................................................................................................
76
7.3 Methods
............................................................................................................
77
7.4 Results
..............................................................................................................
82
7.5 Discussion
........................................................................................................
92
7.6 Conclusions
......................................................................................................
96
7.7 References
........................................................................................................
98
Chapter 8 - HIV testing and tolerance to gender based violence
........................... 101
-
8.1 Abstract
..........................................................................................................
102
8.2 Introduction
....................................................................................................
103
8.3 Methods
..........................................................................................................
104
8.4 Results
............................................................................................................
111
8.5 Discussion
......................................................................................................
120
8.6 Conclusion
.....................................................................................................
124
8.7 References
......................................................................................................
126
Chapter 9 - Uptake of antiretroviral therapy: sex differentials
............................. 129
9.1 Abstract
..........................................................................................................
130
9.2 Background
....................................................................................................
130
9.3 Methods
..........................................................................................................
131
9.4 Results
............................................................................................................
132
9.5 Discussion
......................................................................................................
135
9.6 Conclusion
.....................................................................................................
137
9.7 References
......................................................................................................
137
Chapter 10 - Adherence to treatment and retention in care
.................................. 145
10.1 Abstract
..........................................................................................................
146
10.2 Introduction
....................................................................................................
147
10.3 Methods
..........................................................................................................
147
10.4 Results
............................................................................................................
151
10.5 Discussion
......................................................................................................
163
10.6 Conclusion
.....................................................................................................
165
10.7 References
......................................................................................................
166
Chapter 11 - Discussion and conclusions
..................................................................
169
11.1 Methodological issues
....................................................................................
169
11.2 Discussion of results and overall
conclusions................................................ 170
11.3 Recommendations for policy and practice
..................................................... 181
References
....................................................................................................................
187
Appendices...................................................................................................................
215
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List of figures
Figure 2.1 Adults and children estimated to be living with HIV
(WHO 2011) ............ 5
Figure 2.2 Different levels of determinants of the HIV/AIDS
epidemic ...................... 8
Figure 3.1 Administrative Map of Zambia
..................................................................
32
Figure 5.1 Factors influencing access to HIV/AIDS services
..................................... 57
Figure 6.1 Sampling
strategy.......................................................................................
65
Figure 7.1 Flow chart describing the process for the systematic
review .................... 83
Figure 7.2 Proportion of factors (%) in studies carried out in
high vs. low
income countries
........................................................................................
85
Figure 11.1 Continuum of HIV care
...........................................................................
170
Figure 11.2 What influences access to HIV care
........................................................ 180
List of tables
Table 7.1 Characteristics of the study
........................................................................
80
Table 7.2 Outline of the factors identified per study
................................................. 81
Table 7.3 Ranking of proportion (%) of factors studied in low
and high
income countries
........................................................................................
86
Table 7.4 Meta-estimates: effect of socio-demographic factors on
adherence
to ART
.......................................................................................................
90
Table 7.5 Meta-estimates: effect of socio-cultural factors on
adherence to
ART............................................................................................................
92
Table 7.6 Overview of measurement tools used to evaluate same
socio-
cultural constructs in different studies
....................................................... 94
Table 8.1 Descriptive characteristics of respondents by gender
and testing
status
........................................................................................................
112
Table 8.2 Testing characteristics of respondents by gender and
testing status ........ 113
Table 8.3 Top 10 reasons for non-uptake of HIV testing among
non-tested
participants
...............................................................................................
114
Table 8.4 Crude odds ratios for socio-demographic and
socio-economic
factors
.......................................................................................................
115
Table 8.5 Crude odds ratios beliefs about HIV and ARVs
...................................... 115
Table 8.6 Crude odds ratios of social support factors
.............................................. 117
Table 8.7 Adjusted odds ratios associated with non-uptake of HIV
testing ............ 118
Table 8.8 Multinomial regression: community gossip as a mediator
of the
association between social rejection and HIV
testing.............................. 120
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Table 9.1 Socio-demographic characteristics of the respondents
............................ 133
Table 9.2 Crude odd ratios associated with non-uptake of ART
stratified by
sex
............................................................................................................
134
Table 9.3 Adjusted odd ratios associated with non-uptake of ART
stratified by
sex
............................................................................................................
135
Table 10.1 Characteristics of non adherent respondents as
compared to fully
disengaged from HIV care
.......................................................................
152
Table 10.2 Unadjusted relative risk ratios (RRR) for
socio-demographic and socio-economic factors
............................................................................
153
Table 10.3 Unadjusted relative risk ratios (RRR) for
interpersonal and social
support factors
..........................................................................................
154
Table 10.4 Unadjusted relative risk ratios (RRR) for Health
behavior, literacy and beliefs determinants
factors...............................................................
156
Table 10.5 Unadjusted relative risk ratios (RRR) for
Treatment-related and psychological factors
...............................................................................
157
Table 10.6 Unadjusted relative risk ratios (RRR) for Stigma and
discrimination factors
.......................................................................................................
158
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i
Outline of publications
This thesis is based on the following papers:
As first author:
1. Gari S., Doig-Acuna C., Smail T., Musheke M., Malungo RS J.,
Martin
Hilber A. Ntalasha H, Merten S. A systematic review of
socio-cultural
barriers to access HIV/AIDS services. BMC Health Services
Research
2013, 13:198
2. Gari S., Musheke M., Malungo RS J., Martin Hilber A.,
Schindler C.,
Merten S. Tolerance to gender based violence and HIV testing: a
cross-
sectional study in Zambia. PLoS One. 2013; 8(8): e71922.
3. Gari S., Musheke M., Malungo RS J., Martin Hilber A.,
Schindler C.,
Merten S. Sex differential in the uptake of ART in Zambia. AIDS
Care.
2013; (in press).
4. Gari S., Musheke M., Malungo RS J., Martin Hilber A.,
Schindler C.,
Merten S. Risk of non-adherence and disengagement from ART
programmes: findings from Zambia. Journal of Int. AIDS Society.
2013;
Manuscript submitted for publication
As co-author:
1. Musheke M, Ntalasha H, Gari S, Mckenzie O, Bond V,
Martin-Hilber A,
Merten S: A systematic review of qualitative findings on factors
enabling
and deterring uptake of HIV testing in sub-Saharan Africa. BMC
Public
Health. 2013; 13: 220.
-
ii
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iii
Summary
Zambia has for many years experienced a generalised HIV
epidemic. Large-scale
antiretroviral programmes have been successfully introduced
(Egger et al. 2005;
Stringer et al. 2006). Despite progress in controlling both new
infections and
access to treatment, the scale and impact of the epidemic remain
major concerns.
Persistent social inequalities and discrimination continues to
create significant
barriers to access HIV/AIDS services. It has been argued that
social cohesion,
understood as collective networks of solidarity and trust in a
society, could reduce
susceptibility and vulnerability to HIV (Meyer-Weitz, 2005;
Loewenson, 2007)
and generate social action (Kawachi et al., 1997).
This thesis aimed to investigate the influence of social
cohesion along the
continuum of HIV care in Zambia (uptake of testing; uptake of
ART; adherence to
ART and retention in care). I was particularly interested in
assessing the effect of
specific combinations of social cohesion (couple, household and
neighbours),
economic and individual factors on the decision making related
to access to HIV
services.
To do so, a community-based cross-sectional survey methodology
(N = 3,000)
was implemented in four sites in the Southern and Central
provinces of Zambia:
two rural (Namwala and Monze district), one commercial centre
(Mazabuka) and
one urban area (Lusaka). The rationale behind the sites’ choice
was to have a
comparative setting with varying health system, socio-economic
and socio-
cultural conditions (urban, periurban and rural). The study
population consisted of
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iv
adults, women and men, over the age of 18, who were residents of
one of the four
sites.
This survey was the quantitative part of a larger mixed-method
research study
entitled “Improving equity of access to care and treatment in
Zambia” financed by
the Swiss National Science Foundation (SNSF, project nr: IZ
70ZO-123907). The
development of the questionnaire was informed by the results of
an ethnographic
research carried out within the overall project and a systematic
review of
previously validated questionnaires that I personally carried
out. In order to
investigate the potential associations between social, economic
and individual
factors and access to HIV/AIDS services, the data was primarily
analysed using
multilevel and multinomial logistic regression models adjusting
for potential
confounders.
The main conclusions of this thesis are based on the results of
four studies
conducted to explore the effect of social cohesion along the HIV
care continuum.
The box below presents an overview of what this thesis adds to
the existing
evidence on the influence of socio-structural determinants on
access to HIV/AIDS
services.
What is already known?
Social cohesion plays a positive role in both reducing
susceptibility to HIV and
dealing with vulnerability to AIDS.
Gender-based violence and gender inequalities increase
vulnerability to HIV
infection and deter uptake of HIV testing in women.
HIV/AIDS-related stigma is a major barrier to HIV prevention
efforts hampering
uptake of HIV testing, adherence to ART and delaying general
health seeking among
people with HIV.
The existing quantitative studies on the link between poverty
and HIV/AIDS present
conflicting evidence.
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v
What does this thesis add?
In Zambia, social cohesion - measured by networks of action,
trust and reciprocity
either at the level of the couple, the family and the community
- plays a significant
role in access to HIV/AIDS services even when factors such as
stigma, socio-
economic status, gender and other individual factors are taken
into account.
Not all levels of social cohesion (couple, family and community)
exert their effect in
the same way along the continuum of HIV care.
Not only enacted violence but tolerance to gender-based violence
within
households hampers the uptake of HIV testing. This is often a
reflection of prevailing
social norms with respect to gender and power relations in a
community. High levels
of tolerance to gender-based violence are more common in
discohesive environments.
HIV/AIDS-related stigma strongly hinders uptake of testing and
retention in care.
High levels of stigma are more common in discohesive
environments.
Livelihoods insecurity deters uptake of treatment and adherence
especially in
women. However, increasing social ties can help balance this
negative effect.
Promoting social cohesion among men, especially through
increasing men’s
participation in community activities, could have harmful
effects unless underlying
gender norms of masculinity are mainstreamed in the design of
the intervention.
What do these findings lead to?
Social discohesion and disempowering conditions (discriminatory
gender norms, high
levels of stigma and livelihoods insecurity) are the recurrent
obstacles of access along
the HIV continuum of care in Zambia. The strategy to scale up
access to HIV/AIDS
services in Zambia needs to prioritize interventions aimed at
promoting social
cohesion and reducing disempowering conditions which are
especially present in
discohesive environments.
Social cohesion primarily deals with creating environments that
enable couples,
families and/or communities to overcome (inevitable) social
tensions and conflicts.
These enabling environments can be achieved through facility-,
community- and
policy/institutional- level interventions promoting non-violence
and gender-equitable
norms as well as mobilizing communities to enforce laws
preventing discrimination
based on gender and/or HIV status.
The detailed results are presented in four scientific papers
that have been included
as chapters in this thesis (Chapter 6 to Chapter 9).
-
vi
Chapter 6 investigates, through a systematic review and
meta-analysis, the
evidence-based on social and cultural barriers to access
HIV/AIDS services. The
results revealed that there is a tendency, in quantitative
studies, to study the same
factors survey after survey. Furthermore, this trend varies with
the economic level
of the country. In low-income countries, surveys tend to examine
socio-economic
factors and health education, whereas in high-income countries
more attention is
paid to clinical and psychosocial factors such as depression,
anxiety, self-efficacy
and/or sexual identity. The effect of family and social
relationships, including
interpersonal violence, received, comparatively, little
attention in both rich and
poor countries. These results were instrumental in focusing my
research on the
influence of social cohesion in access to services for
prevention and treatment of
HIV/AIDS.
Chapter 7 investigates the influence of social cohesion factors
on uptake of HIV
testing through multilevel logistic regression analysis. This
study shows that not
only enacted violence is a burden for HIV prevention but that
tolerance to gender-
based violence is strongly associated with non-uptake of HIV
testing. It further
reports that cohesive couples (those with less conflicts and
more trust) report
lower levels of tolerance to gender-violence and are more likely
to test. Promoting
couple cohesion may help to reduce power imbalances in the
couple.
Chapter 8 investigates the factors influencing uptake of ART and
the gender
differences in these associations through a case control
analysis. It reports that
gender differences in the way men and women perceived their
health and
anticipated the experience of taking ARVs which ultimately
determined their
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vii
decision to accept or not ART treatment. In Zambia, decisions
about ARV
treatment for men may be influenced more significantly by social
factors and
therefore may be more susceptible to external influences, while
for women, this is
a more personal (individualistic) decision provided they have
the necessary
support to cover the material and social costs associated with
the treatment.
Chapter 9 investigates which socio-structural factors play a
role in adherence and
retention in HIV care through a multinomial logistic regression
analysis. This
study shows that non-adherence to treatment appears to be
strongly affected by
external factors such as financial and livelihoods constraints
while retention in
care is more affected by internal factors such as gender, stigma
and self-efficacy.
Some factors which are largely established as barriers to
adherence in the
literature (e.g. side effects, lack of transport to go to the
clinic, alcohol abuse or
traditional medicine beliefs) were significant in bivariate
analyses but not in the
adjusted ones. Food insecurity, stigma problems, marital
conflicts and self-
efficacy issues outweighed their effect in this study.
In conclusion, this thesis shows that social cohesion influence
access to
HIV/AIDS services in Zambia. Promoting greater social cohesion
in local
communities in Zambia has the potential to reduce social
inequalities that deters
access to HIV/AIDS services. It may also facilitate collective
action, for reducing
tolerance to violence, reducing stigma and discrimination and
compensating
economic burden. However, the mobilisation of social cohesion in
local
communities requires an awareness of the risk of rising
inequality, especially for
men unless “masculine” gender norms are changed.
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viii
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ix
Zusammenfassung
Sambia erlebt seit vielen Jahren eine allgemeine HIV-Epidemie.
Umfangreiche
antiretrovirale Therapie-Programme sind erfolgreich eingeführt
worden (Egger et
al. 2005; Stringer et al. 2006). Ungeachtet der Fortschritte
hinsichtlich der
Kontrolle von neuen Infektionen und dem Zugang zu medizinischer
Versorgung
sind sowohl das Ausmaß als auch die Auswirkungen der Epidemie
nach wie vor
von großer Relevanz. Anhaltende soziale Ungleichheiten und
Diskriminierung
erschweren bzw. verhindern immer wieder den Zugang zu
HIV/AIDS-Diensten.
Es wurde behauptet, dass soziale Kohäsion - also gemeinsame
solidarische
Netzwerke und Vertrauen in die Gesellschaft - die Anfälligkeit
und
Verletzlichkeit bezüglich HIV reduziert (Meyer-Weitz, 2005;
Loewenson, 2007)
und ein soziales Handeln erzeugen kann (Kawachi et al.,
1997).
Das Ziel dieser Dissertation war es, den Einfluss sozialer
Kohäsion auf die HIV-
Versorgung in Sambia zu untersuchen (Durchführung von Tests;
Durchführung
von ART; Einhaltung von ART und Verbleib in der Versorgung).
Mein
besonderer Fokus lag in der Abschätzung des Effektes zwischen
spezifischen
Kombinationen sozialen Zusammenhaltes (Partnerschaft, Haushalt
und
Nachbarschaft), wirtschaftlichen und individuellen Faktoren, die
die
Entscheidungsfindung bezüglich des Zugangs zu HIV-Diensten
beeinflussen.
Dazu wurde an vier Orten in den südlichen und zentralen
Provinzen Sambias eine
gemeindebasierte Querschnittsstudie (N = 3,000) durchgeführt:
zwei ländliche
Orte (Namwala- und Monze-Distrikt), ein Handelszentrum
(Mazabuka) und eine
städtische Gegend (Lusaka). Die Orte wurden aufgrund
vergleichbarer
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x
Hintergründe mit variierenden Gesundheitssystemen,
sozioökonomischen und
soziokulturellen Bedingungen (urban, suburban, ländlich)
ausgewählt. Die
Studienpopulation umfasste erwachsene Frauen und Männer,
mindestens 18 Jahre
alt, die an einem der vier Orte ansässig waren.
Diese Datenerhebung war der quantitative Teil einer größeren,
von der Swiss
National Science Foundation (SNSF, project nr: IZ 70ZO-123907)
finanzierten
Mixed-Methoden Forschungsstudie mit dem Namen “Improving equity
of access
to care and treatment in Zambia”.
Der Fragebogen wurde mit Hilfe der Resultate einer
ethnographischen
Untersuchung, die innerhalb des gesamten Projekts ausgeführt
wurde, und eines
systematischen Reviews von vorausgehend validierten Fragebögen,
die ich
persönlich durchgeführt habe, entwickelt. Um die potenziellen
Zusammenhänge
zwischen sozialen, wirtschaftlichen und persönlichen Faktoren
und dem Zugang
zu HIV/AIDS-Diensten zu ermitteln, wurden die Daten zunächst
mittels
multilevel und multinomialer logistischen Regressionsmodellen
analysiert, welche
hinsichtlich möglicher Störfaktoren angepasst wurden.
Die wichtigsten Schlussfolgerungen dieser Arbeit basieren auf
den Resultaten von
vier Studien zur Erforschung der Effekte sozialer Kohäsion auf
die HIV-
Versorgung.
Die Ergebnisse werden ausführlich in vier wissenschaftlichen
Artikeln dargestellt,
die jeweils als ein Kapitel in dieser Dissertation beinhaltet
sind (Kapitel 6 bis
Kapitel 9).
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xi
In Kapitel 6 werden mittels eines systematischen Reviews und
einer Meta-
Analyse die sozialen und kulturellen evidenz-basierten
Hindernisse analysiert, die
den Zugang zu HIV/AIDS-Diensten erschweren. Die Ergebnisse
zeigen, dass in
quantitativen Studien eine Tendenz existiert, dieselben Faktoren
zu untersuchen.
Des Weiteren variiert dieser Trend mit dem wirtschaftlichen
Stand des jeweiligen
Landes. In einkommensschwachen Ländern werden eher Umfragen
zu
sozioökonomischen Faktoren und gesundheitlicher Aufklärung
durchgeführt,
während in einkommensstarken Ländern klinische und psychosoziale
Faktoren
wie Depressionen, Ängste, Selbstwirksamkeit und/oder sexuelle
Identität die
Schwerpunkte der Umfragen sind. Die Einflüsse von familiären und
sozialen
Beziehungen, was auch zwischenmenschliche Gewalt beinhaltet,
fanden in den
armen wie auch in den reichen Ländern vergleichsweise wenig
Beachtung. Diese
Resultate spielten eine wichtige Rolle dabei, meine
Forschungsarbeit auf die
soziale Kohäsion bezüglich dem Zugang zu Dienstleistungen für
die Prävention
und die Behandlung von HIV/AIDS zu fokussieren.
Kapitel 7 untersucht den Einfluss von sozialer Kohäsion auf die
Durchführung
von HIV-Tests mittels multilevel logistischer
Regressionsanalyse. Diese Studie
zeigt, dass nicht nur ausgeführte Gewalt eine Belastung für
HIV-Prävention ist,
sondern dass auch die Toleranz bezüglich geschlechtsspezifischer
Gewalt stark
mit der Nicht-Durchführung von HIV-Tests zusammenhängt.
Weiterhin wird
gezeigt, dass kohäsive Paare (mit weniger Konflikten und mehr
Vertrauen)
geschlechtsspezifischer Gewalt gegenüber weniger Toleranz zeigen
und eher
bereit sind, sich auf HIV testen zu lassen. Förderung von
Zusammenhalt in einer
-
xii
Partnerschaft kann helfen, Machtungleichgewichte zwischen
Partnern zu
reduzieren.
Kapitel 8 untersucht die Faktoren, die die Durchführung der ART
beeinflussen,
und die Geschlechtsunterschiede innerhalb dieser Zusammenhänge
mittels einer
Fall-Kontroll-Analyse. Es wird festgestellt, dass die
Geschlechter sich bei der
Gesundeitswahrnehmung und der Erwartung gegenüber der Erfahrung,
ARV’s zu
nehmen, unterscheiden, was sie schließlich veranlasst, die
ART-Behandlung zu
akzeptieren oder nicht zu akzeptieren. In Sambia können
Entscheidungen
bezüglich ARV-Behandlung bei Männern erheblich von sozialen
Faktoren
beeinflusst werden und sind deshalb wahrscheinlich empfänglicher
für externe
Einflüsse, während es für Frauen eine persönliche (individuelle)
Entscheidung ist,
vorausgesetzt, dass sie die nötige Unterstützung haben, um die
mit der
Behandlung verbundenen materiellen und sozialen Kosten zu
decken.
In Kapitel 9 wird anhand einer multinomialen logistischen
Regressionsanalyse
untersucht, welche soziostrukturellen Faktoren eine Rolle
hinsichtlich Einhaltung
und Verbleib der HIV-Versorgung spielen. Diese Studie zeigt,
dass die
Nichteinhaltung der Behandlung stark von externen Faktoren wie
finanziellen und
existentiellen Nöten betroffen zu sein scheint, während der
Verbleib eher von
internen Faktoren wie Geschlecht, Symptomen/Stigma und
Selbstwirksamkeit
betroffen sind. Manche Faktoren, die sich in der Literatur in
hohem Masse als
Hindernisse für die Einhaltung etabliert haben (z.B.
Nebenwirkungen, fehlende
Transportmittel zur Klinik, Alkoholmissbrauch oder der Glaube an
die
traditionelle Medizin), waren signifikant in den bivariaten
Analysen, dies galt
-
xiii
jedoch nicht für die angepassten. Ernährungsgefährdung,
Stigma-Probleme,
Ehekonflikte und Selbstwirksamkeits-probleme überwogen ihren
Effekt in dieser
Studie.
Zusammenfassend zeigt diese Arbeit, dass soziale Kohäsion den
Zugang zu
HIV/AIDS-Hilfe in Sambia beeinflusst. Die Förderung von mehr
sozialer
Kohäsion in lokalen Gemeinschaften in Sambia hat das Potential,
soziale
Ungleichheiten zu reduzieren, die vom Zugang zu HIV/AIDS-Hilfe
abhalten. Sie
kann auch das kollektive Handeln erleichtern, was die
Gewalt-Toleranz, Stigma
und Diskriminierung reduziert und wirtschaftliche Belastungen
kompensiert. Wie
dem auch sei, die Mobilisierung der sozialen Kohäsion in den
einheimischen
Gemeinschaften erfordert ein Bewusstsein für die Risiken der
zunehmenden
Ungleichheit, insbesondere für Männer es sei denn
„männliche“
Geschlechternormen werden verändert.
-
xiv
-
xv
Acknowledgments
These years of doctoral training have been an enlightening
journey for me. I am
deeply grateful to all of you who have supported me in many
ways, in life as well
as in work, during this time.
I acknowledge the financial support provided for the project by
the Swiss National
Research Foundation and the personal research grant awarded by
the Spanish
Ministry of Foreign Affairs and Cooperation and the Spanish
Agency of
International Development.
I owe much gratitude to my supervisor, Sonja Merten. Your
support, dedication
and encouragement have seen me through this research. I am also
grateful to
Jacob Malungo, my co-supervisor at the University of Zambia, for
sharing his vast
experience with me.
I warmly thanks my colleagues and collaborators: Maurice
Musheke, Adriane
Martin-Hilber, Christian Schindler, Harriet Ntalasha, Oran
McKenzie, Mario
Merten and Li Zemp for their support and good advice over these
years. Special
thanks to Crisipin Chicani, Deffent Shikapande and all the
interviewers, for the
hard work during the fieldwork and for all the good moments we
lived together in
Zambia. My sincere gratitude also to all community members who
generously
shared their views and experiences with us.
I would also like to dedicate a few words to my fellow PhD
students and friends
for always keeping a positive atmosphere in “our” PhD house. A
very big thank
you goes to Katrin, Gian Andri, Frederique, Federica, Aboud,
Evi, Alex, Tamara,
and of course, my daily trip-companion Verena for sharing the
burden and joy of
this adventure.
Last but not least, my special thanks goes to my beloved family
and friends who
have constantly been by my side, even in the distance.
Particular thanks must go
to the my “big five”: mum, dad, my sister Marta, Victor and
Tino. There are no
words to express my feelings. Thank you for your immense
patience and
everlasting love and support.
-
xvi
Acronyms and abbreviations
AIDS Acquired Immuno Deficiency Syndrome
ANC Ante Natal Clinic/Care
ARV Anti Retro Viral (drugs)
CHW Community Health Worker
CI Confidence Interval
CSO Central Statistical Office
DHS Demographic and Health Survey
FBO Faith-based organizations
FGD Focus groups discussion
HIV Human Immunodeficiency Virus
IAG Inter-Agency Group
MCH Mother and Child Health care/clinic
MoH Ministry of Health
NGO Non Governmental Organisation
OR Odds Ratio
PHC Primary Health Care
PhD Philosophers Degree
TB Tuberculosis
UNFPA United Nations Population Fund
UNICEF United Nations Children’s Fund
UNIP United National Independence Party
USD United States Dollar
UNZA University of Zambia
VCT Voluntary, counselling and treatment services
WB World Bank
WHO World Health Organisation
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Chapter 1 - Introduction
1
Chapter 1 - Introduction
This thesis has been carried out in the framework of the
three-year research
project “Improving equity of access to care and treatment in
Zambia” funded by
the Swiss National Science Foundation (SNSF, project nr: IZ
70ZO-123907). The
overall research project has been implemented in collaboration
with the Swiss
Institute of Tropical Medicine and Public Health, the University
of Zambia and
the Zambia AIDS Related Tuberculosis Project (ZAMBART). It aims
at exploring
the factors that influence access to HIV/AIDS services and
health-seeking
behaviour in Zambia based on a mixed methods approach. Dr. Sonja
Merten (my
main supervisor) and Dr. Jacob Malungo (co-supervisor at the
University of
Zambia) have been the principal investigators.
I became a member of this wider project in 2010 as a PhD student
in the Swiss
Tropical and Public Health Institute associated with the
University of Basel. My
first task was to prepare my own (PhD) research proposal. To do
so, I carried out
several comprehensive reviews of the literature, covering both
qualitative and
quantitative studies. This allowed me to broaden my knowledge of
theories
explaining social cohesion and health behaviour. As a health
psychologist
working in public health programmes my interest was to explore
how the local
social conditions in Zambia shape access to services (testing,
uptake of ART,
adherence and retention in care). Through the literature review
I identified a wide
array of individual, cognitive, social, cultural, and economic
factors that hinder
access to HIV/AIDS services and I also identified some gaps in
research.
Most quantitative studies used facility-based samples, thus
little was known about
the distribution of the problem in the general population
(compared to those
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Chapter 1 - Introduction
2
accessing and adhering). Moreover, the majority of studies
assessed determinants
of access using individual-level factors. There was a need to
investigate how these
factors interact with other potential factors at the community
and household
levels. Furthermore, little attention was paid to the
socio-relational dynamics
within the family and communities, although this was identified
as a main
influence on treatment seeking in a range of qualitative studies
(Merten, 2010). If
HIV prevention programmes are to reach more people, it is
crucial to
comprehensively examine the factors that are constraining access
to the
HIV/AIDS services at all levels.
This thesis and the scientific publications that it provides,
contributes to
progressing in the understanding of the socio-relational
processes that interact
with structural conditions, such as gender inequities and
poverty, and that
ultimately impact the ability of people to access HIV care. It
also provides
evidence of which factors influence every step of the HIV
continuum of care thus
advising on how to prioritize efforts to eliminate barriers to
testing and uptake of
treatment. The results are relevant for policy and practice to
improve HIV
prevention strategies in Zambia.
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Chapter 2 - Global epidemiology of HIV
3
Chapter 2 - Global epidemiology of HIV
2.1 Status of the HIV epidemic
In the thirty years, since the first cases of AIDS were
recognised, HIV/AIDS has
affected the lives of millions of people all over the world.
Globally, about 34.0
million people were living
with HIV at the end of
2011. The overall
prevalence of infection
among adults aged 15-49
years worldwide is 0.8%.
However, this overall
figure is misleading as
prevalence of infection varies dramatically across the world.
According to the last
estimates (UNAIDS, 2010) the burden of the epidemic continues to
vary
considerably between countries and regions.
The proportion of individuals infected is highest in sub-Saharan
Africa, with
nearly 1 in every 20 adults (4.9%) living with HIV and
accounting for 69% of the
world’s HIV infected population.
Prevalence is highest in southern and eastern Africa, with one
in four adults
infected in Swaziland, and a prevalence of over 15% among adults
in six other
countries (Lesotho, Namibia, South Africa, Botswana, Zambia and
Zimbabwe).
In West and Central Africa, the HIV prevalence remains
comparatively low, with
prevalence among adults estimated at 2% in 12 countries (Benin,
Burkina Faso,
Democratic Republic of the Congo, Gambia, Ghana, Guinea,
Liberia, Mali,
Table 1 Global HIV/AIDS Epidemic
Number of people living with HIV in 2009
Total 33.3 million (31.4 -35.3 million)
Adults 30.8 million (29.2-32.6 million)
Women 15.9 million (14.8-17.2 million)
Children under 15 years 2.5 million (1.6-3.4 million)
People newly infected with HIV in 2009
Total 2.6 million (2.3-2.8 million)
Adults 2.2 million (2.0-2.4 million)
Children under 15 years 370,000 (230,000-510,000)
AIDS deaths in 2009
Total 1.8 million (1.6-2.1 million)
Adults 1.6 million (1.4-1.8 million)
Children under 15 years 260,000 (150,000-360,000) Source:
UNAIDS, 2010.
javascript:popUp('ID501_S3S1_100_010.html')
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Chapter 2 - Global epidemiology of HIV
4
Mauritania, Niger, Senegal, and Sierra Leone). The highest
prevalence of HIV has
been reported in Cameroon at 5.3%, Central African Republic
4.7%, Côte d’Ivoire
3.4%, Gabon 5.2%, and Nigeria 3.6%. Programme data and research
provide
strong evidence that, in most West African countries high, rates
of male
circumcision, compared to other parts of sub-Saharan Africa,
have helped to
contain the spread of HIV and other sexually transmitted
infections (STIs). But
there is no evidence that male circumcision directly reduces
transmission to
women, or among men who have sex with men. Another feature of
HIV
epidemics in West Africa is the presence of the HIV-2 strain
which is less
transmissible and shows lower progression to disease. However,
in most
countries, the relative importance of HIV-1 has increased and is
continuing to do
so (Jenkins & Robalino, 2003).
No other region has similar HIV prevalence to those reported in
sub-Saharan
Africa. However, prevalence are relatively high in some
countries in Latin
America and the Caribbean (Bahamas 3.1%, Belize 2.3%, Haiti
1.9%, Guyana
1.2%), some countries in Eastern Europe and Central Asia
(Ukraine 1.1%,
Russian Federation 1.0%) and in South-East Asia (Thailand 1.3%,
Myanmar
0.6%, Cambodia 0.5%). (UNAIDS, 2010)
In contrast, HIV prevalence remains at less than 0.2% in many
countries in North
Africa and the Middle East. Yet, “low prevalence does not equate
to low risks”
(the World Bank, 2003). UNAIDS estimates that 75,000
(61,000-92,000) people
from the Middle East and North Africa were newly infected with
HIV/AIDS in
2009 alone, more than double from 2001 (36, 000). Furthermore
24,000 (20,000-
-
Chapter 2 - Global epidemiology of HIV
5
27,000) adults and children died from the disease in the same
year which is more
than 3 times than in 2001 (8,300). (UNAIDS, 2010)
Figure 2.1 Adults and children estimated to be living with HIV
(WHO 2011)
Note: Adapted from Hankins (2013)
Current scientific knowledge about HIV/AIDS transmission shows
that once
infection rates exceed “a certain threshold, the virus spreads
very fast, sometimes
increasing by as much as tenfold in five years as has been the
case in several
southern African countries” (the World Bank, 2005). This is
technically described
by the concept of reproductive rate (Ro), which is the average
number of persons
infected by a single disease source.1 If governments delay
action, scholars believe
the trend witnessed in other regions will likely recur in the
Middle East and North
Africa.
1 In other words, this is the number of expected secondary
infections resulting from a single current infection.
The threshold is exceeded when the reproductive rate exceeds
one. This means that, if infected individuals, on
average, infect more than one additional person in their
lifetime, the disease will continue to spread within a
population and the epidemic will be sustained and grow. At base,
the threshold is usually designated as, and
equal to, a 5 percent infection rate in most countries. (UNAIDS
& WHO, 2003)
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Chapter 2 - Global epidemiology of HIV
6
2.2 Key drivers of the HIV/AIDS epidemic
An understanding of the factors influencing the prevalence of
HIV in the
population is essential to control the epidemic. After nearly
three decades of
AIDS, the heterogeneity of the epidemic is well known. There are
many factors
that drive the epidemic and contribute not only to its regional
variation but to
intra-national differences. Early studies of HIV/AIDS focused on
individual
characteristics and behaviours in determining HIV risk, an
approach that is known
as “biomedical individualism” (Fee & Krieger, 1993).
Biomedical individualism
is the basis of risk factor epidemiology and focuses on risk
manifested at
individual level (Poundstone, 2004). Interventions based on this
approach focus
on individual behaviour change to prevent HIV transmission and
promote access
to clinical AIDS care.
While this approach has improved our understanding of
individuals with or at risk
of AIDS, public health interventions focusing narrowly on
individual risk
behaviour has proved insufficient to address the many challenges
of the HIV
epidemic. One of the main criticisms is that biomedical
individualist approaches
neglect the social context in which individuals are embedded
which can put them
at risk by increasing their vulnerability to acquire or transmit
HIV infection.
Social epidemiology emphasizes the social conditions as
fundamental causes of
disease and focus explicitly on the factors and pathways by
which societal
conditions (socio-relational, economic and political
environments) affect health
(Link & Phelan, 1995). Interventions based on this approach
foster individual
agency to allow people to act in their own and their community’s
best interests
(including taking up targeted behavioural and biomedical
technologies), create
and support AIDS-competent communities (Campbell, 2009), and
build health-
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Chapter 2 - Global epidemiology of HIV
7
enabling environments. They seek to modify social conditions by
addressing the
key drivers of HIV vulnerability (i.e. the ability of
individuals to protect
themselves and others from acquiring or transmitting HIV
infection).
Currently, there is enough scientific evidence showing that the
determinants of
HIV/AIDS vulnerability must be conceptualized at multiple
levels: individual,
social and structural levels. Individual-level factors include
biologic, demographic
and behavioural risk factors that may influence the risk of HIV
acquisition and
disease progression. Social-level factors include critical
pathways by which
community and network structures link persons to society. These
factors are
central to understanding the diffusion and differential
distribution of HIV/AIDS in
population subgroups. Structural-level factors are contextual
conditions outside
the control of individuals which influence their perceptions,
their behaviour and
their health. This broad view of structural factors may include
features of the
social, cultural, economic, political and physical
environment.
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Chapter 2 - Global epidemiology of HIV
8
Figure 2.2 Different levels of determinants of the HIV/AIDS
epidemic
Note: The dotted lines separating the levels illustrate the
porous nature of the distinctions made
between levels of analysis. In reality, there are extensive
linkages between determinants at all
levels that give rise to observed epidemic patterns.
Source: Poundstone et al., 2004
2.2.1 Biomedical factors
Biological mediators of infectivity. The probability of HIV
transmission is
influenced by the type of the virus involved, the part of the
body it enters and the
integrity of the skin or mucosal barrier. For example, the lower
infectivity of HIV-
2 compared to HIV-1 implies that fewer of those exposed to HIV-2
will be
infected per exposure. Because of its relatively poor capacity
for transmission,
HIV-2 is largely confined to West Africa (Reeves & Doms,
2002). The estimated
risk of transmission of HIV per single sexual contact is 0.04%
for women-to-men
and 0.08% for men-to-women. (Holmes et al., 2008; Boily et al.,
2009) The
integrity of the skin and mucous membranes of the body also
influences the
susceptibility of infection. Ulcerations and lesions of the skin
due to co-infection
with sexually transmitted infections (STIs) increase the risk of
sexual HIV
https://en.wikipedia.org/wiki/West_Africa
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Chapter 2 - Global epidemiology of HIV
9
transmission. (Mbopi et al., 1999; Hook et al., 1992) A host of
epidemiological
studies suggest that STIs are co-factors for HIV acquisitions or
transmission.
(Gray et al., 2001)
Vaginal infections are also emerging as important risk factors
for HIV (Buve,
2002; Gregson et al., 2001). Brakes and abrasions of the mucous
membranes of
the body can be caused by behavioural factors such as vaginal
practices which
have been associated with an increased risk of infection.
(Martin-Hilber et al.,
2007)
Male circumcision is one of the most striking pieces of evidence
that emerged in
recent years as a protective factor for HIV infection. However,
its protection is
only partial. Randomized control trials have shown to reduce
infection inmen but
no clear decrease in transmission from men to women and there is
no information
on transmission between men who have sex with men. (Weiss et
al., 2010)
Exposure to infected blood or blood products through injection
drug use and
blood transfusion are two mechanisms of HIV exposure to infected
blood.
Because of the efficiency of HIV transmission through needle
sharing, the
introduction of HIV into an urban network of injecting drugs
users can quickly
raise the HIV prevalence in this population (Chaisson et al.,
1989). The
probability of becoming infected through an HIV-contaminated
transfusion is
estimated at more than 90 % (UNAIDS, 1997), and the amount of
HIV in a single
contaminated blood transfusion is so large that individuals
infected in this manner
may rapidly develop AIDS.
Perinatal HIV transmission provides evidence of the significance
of viral load
and transmission risk. In a randomized clinical trial in Kenya,
maternal viral loads
higher than 43,000 copies per millilitre increased four times
vertical transmission
http://www.ncbi.nlm.nih.gov/books/NBK11782/#A2492
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Chapter 2 - Global epidemiology of HIV
10
(John et al., 2001). Transmission through breastfeeding is
likely associated with
an elevated viral load in the breast milk, which in turn is
associated with maternal
plasma viral load and CD4 T cell levels (Read 2003; Coutsoudis
et al, 2001).
2.2.2 Behavioural factors
The types of sexual contacts and the presence of certain
co-factors in the setting
will determine the transmission risk per sexual contact. For
example, HIV is more
easily transmitted through anal than vaginal sex, possibly
because anal mucous is
more susceptible than vaginal mucosa and it is rarely acquired
through oral sex
(Holmes et al., 2008).
(Un) Protected sex. Studies with cohorts of discordant couples
have shown that
consistent condom can reduce HIV transmission by 80-95% (Holmes
et al., 2008).
Other studies show that condoms are less used in poorer
countries, a problem
which has been largely attributed to problems of access and
service provision
(Wellings et al., 2006). The capacity of female barriers to halt
the spread of HIV
is unclear (Myer et al., 2005). Some studies found an increased
risk of acquiring
HIV, possibly due to irritation of the genital membranes
providing an entry point
to the virus (Wilkinson et al., 2002). Yet, a recent trial found
that a vaginal gel
reduced the risk of HIV (Abdool Karim et al., 2010).
Multiple sexual partners have proved to increase the risk of
STIs and HIV in both
men and women (Gouveia-Oliveria & Pedersen, 2009). Women
risk is also
significantly increased if her partner has multiple partners
(Canchichuaman et al.,
2010). Multiple partnerships can occur serially (i.e. one begins
after another has
http://www.ncbi.nlm.nih.gov/books/NBK11782/#A2373
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Chapter 2 - Global epidemiology of HIV
11
ended) or concurrently (i.e. people has other sexual partners
while continuing
sexual activity with the original partner). Concurrent
partnerships have been
widely believed to play a role in accelerating the spread of
HIV, especially in sub-
Saharan Africa. However, emerging evidence refutes this idea
concluding that the
risk is not affected by whether those partnerships overlap in
time (Tanser et al.,
2011; Sawers et al., 2011; Sawers & Stillwaggon, 2010).
Sexual networks and sexual mixing patterns also play an
important role in the
transmission of HIV and in understanding disparities of HIV
infection across
social groups. Sexual networks are structural and temporal
representations of the
way in which individuals are linked through sexual
relationships, and provide
pathways through which infection can be transmitted (Day et al.,
1998).
Partnership and network formation, and the chance of acquiring
and transmitting
an infection sexually are not random; they are determined by
individual factors,
cultural values, geography, demography, economics, health
service, and political
and legal structures (Doherty et al., 2005). As a result, there
are individuals whose
sexual behaviour patterns, and social and health-seeking
behaviours within
networks, contribute disproportionately to the transmission of
infection. Sexual
mixing patterns are especially important in the transmission of
HIV. Assortative
mixing refers to sexual partnerships among people with similar
risk for HIV and
disassortative mixing occurs when partnerships form between
higher and lower
risk people (Laumann & Youm, 1999; Aral et al., 1999).
Usually, HIV spreads
into the wider population when disassortative sexual mixing
occurs. For example,
a man may acquire HIV infection from a commercial sex worker
(CSW) and then
transmit the infection to his regular partner. In many
countries, sex workers have
been considered a core group for the transmission of HIV and
other sexually
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Chapter 2 - Global epidemiology of HIV
12
transmitted diseases (STDs) due to high infection rates and
large number of sexual
partners (Plummer at al., 1991). In addition, men who have both
commercial and
non-commercial sex partners play a major role in bringing HIV
infection into the
general population. These “bridge” populations are increasingly
recognized as
much important as core groups in HIV prevention programmes
(Morris at al.,
1996). The regular partners, or non-commercial partners of sex
workers, are
another important core group (Bloem et al., 1998). Several
studies have observed
a high prevalence of HIV infection and other STIs in African
truck drivers, who
are highly mobile both within countries and across borders
(Ramjee et al., 2002,
Lankoande et al., 1998; Hudson, 1996). Partnerships between
individuals who do
not use illicit drugs and those who inject illicit drugs is
another example of
disassortative mixing associated with HIV infection (Adimora et
al., 2006; Kerr et
al., 2006; Panda et al., 2005; Ellerbrock et al., 2004).
Furthermore, evidence
suggests that age-mixing (age differences between partners) in
sexual
relationships can be an important factor in explaining the
spread of STIs and HIV
in a population (Hurt et al., 2010; Leclerc-Madlala, 2008;
Helleringer & Kohler,
2007; Doherty et al., 2005). Sexual relationships between older
men and younger
women increase the risk of acquiring infection among females
(Ford et al., 2004;
Kelly et al., 2003; Gregson et al., 2002;). When a young woman
enters into a
sexual relationship with a man older than her, she is at a
higher risk of contracting
HIV than if she entered a relationship with a man of her own age
(Ott et al, 2011).
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Chapter 2 - Global epidemiology of HIV
13
2.2.3 Social and structural factors
For the purpose of this thesis, socio-structural factors are
contextual conditions
outside the control of individuals which influence their
perceptions, their behavior
and their health. This broad view of socio-structural factors
may include features
of the social, cultural, economic, political and physical
environment.
Gender power inequities. Hierarchical relations of power between
women and
men tend to put women in disadvantage preventing gender equality
and increasing
the risk of infection in women. Women often experience the
impact of HIV more
severely than men. About 40% of all adult women with HIV live in
southern
Africa. In the Caribbean, as in sub-Saharan Africa, women and
girls outnumber
men and boys among people living with HIV. In Asia, women
account for a
growing proportion of HIV infections: from 21% in 1990 to 35% in
2009. In
2009, women comprised about 26% of the people living with HIV in
North
America and 29% of those in Western and Central Europe (UNAIDS,
2010).
Women are both biologically and socially more vulnerable to HIV
infection. Most
prevention interventions have focused on sex workers or mother
to child
transmission (Carovano 1991). However, most women contract HIV
from their
primary partners (Exner et al., 1997; Allen et al., 1992.).
Thus, to reduce HIV
infection in women it is essential to focus on reducing the
spread of HIV among
men (Konde-Lule et al., 1997; Serwada et al., 1995).
Relationship power inequity
and intimate partner violence increases incidence of HIV
infection in women
(Jewkes, 2010) and power inequities in decision making and fear
of abandonment
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Chapter 2 - Global epidemiology of HIV
14
and violence hinders women’s access to HIV testing (Musheke,
2013; Jürgensen
et al., 2012; Edin & Hurtig, 2010; Theuring et al., 2009;
Tolhurst et al., 2008).
Stigma and discrimination is considered one of the greatest
obstacles to control
the HIV epidemic. It has been consistently associated with
rejection to uptake
HIV testing (Jürgensen et al., 2012; Dye, Apondi & Lugada,
2011; Skovdal et al.,
2011; Larsson et al., 2010; Simpson, 2010; Njozing, Edin &
Hurtig, 2010; Roura
et al., 2009). Despite the importance of stigma on the spread of
the epidemic,
there remains much controversy on how to define such construct.
Stigma has
often been examined from an individual perspective in studies of
perceptions and
interpersonal interactions (Link and Phelan, 2001). Some of the
best known
conceptualizations are: Herek et al. (1998 p.36) as “the
prejudice, discounting,
discrediting, and discrimination that are directed at people
perceived to have
AIDS or HIV and at the individuals, groups, and communities with
which these
individuals are associated”; Link & Phelan, (2001 p. 367)
“when elements of
labelling, stereotyping, separation, status loss, and
discrimination co-occur in a
power situation that allows the components of stigma to unfold”;
Parker &
Aggleton (2003, p.16) who call for a new conceptual framework
“to reframe our
understandings of stigmatization and discrimination to
conceptualize them as
social processes that can only be understood in relation to
broader notions of
power and domination”.
Social capital (individual and collective). Several studies have
examined social
capital in the context of HIV/AIDS. In South Africa, Campbell et
al. (2002)
examined one dimension of social cohesion, civic participation,
in order to assess
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Chapter 2 - Global epidemiology of HIV
15
community influences on HIV infection. They found that
participation in certain
types of organizations (e.g. churches, sports clubs, and youth
groups) was
protective, while membership in other social groups (e.g. groups
with high levels
of social drinking) increased HIV risk. Studies using a social
network approach
have demonstrated that patterns in the structure of
relationships (social network)-
rather than differences in individual risk behaviours
alone-explain observed HIV
patterns (Poundstone, 2004; Friedman et al., 2000). Specific
network
characteristics that have been associated with HIV/AIDS include:
(i) social
network size (Friedman et al., 1997), (ii) the centrality of
HIV-positive persons
within networks (Rothenberg et al., 1995), (iii) patterns of
partner selection
(Zaric, 2002; Laumann et al., 1999). Network-related social and
normative
influences have also been associated with individual HIV risks
such as the use of
illicit drug (Lovell, 2002) and condom use behaviour (Latkin et
al., 2003;
Sherman & Latkin, 2001). More recently, it has been explored
how
neighbourhood factors shape population HIV/ AIDS patterns.
Length of survival
after an AIDS diagnosis, both before and after the introduction
of ART has been
associated with neighbourhood measures of income (Wallace, 2003;
McFarland et
al., 2003; Rapiti et al., 2000). According to Poundstone (2004),
other
neighbourhoods factors that may play a role in shaping HIV/AIDS
patterns are
income inequality (Kawachi, 2000) and residential segregation by
race/ethnicity
(Acevedo-Garcia, 2000).
Legal structures refer to laws that, according to Burris et al.
(2002), can affect
health in two ways: 1) influencing social determinants that
affect health (direct
effect) such as legal restrictions on access to sterile
injection equipment, which
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Chapter 2 - Global epidemiology of HIV
16
have been associated with higher HIV incidence (Friedman et al.,
2001); and 2)
shaping social conditions associated with health outcomes
(indirect effect) such as
tax laws on income inequality, that may worsen social conditions
and increase
HIV vulnerability. According to laws underlie many key social
determinants of
HIV/AIDS, including housing, poverty and income inequality,
racism and
community social organization (Poundstone et al. 2004; Lazzarini
et al., 2002).
Demographic change also affects HIV/AIDS patterns through
migration,
urbanization and the age and gender structures of subpopulations
(Poundstone,
2004). It is now well accepted that HIV/AIDS greatly spread in
environments of
social vulnerability and exclusion. Migrants and mobile
populations often live in
such environments, hence increasing their vulnerability to HIV.
Some migrants
are most vulnerable at their destination – for example, men who
work far from
home, such as mine workers, farm workers and military personnel
who live in
men-only camps or barracks (IOM, 2003; John Snow, 2001). For
others, the
greatest risk occurs in transit, when female informal traders or
farm workers
might have to trade sex in order to survive or complete their
journeys. (Legget
2001; IOM, 2003)
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Chapter 2 - Global epidemiology of HIV
17
2.3 Global action to control HIV
“Getting to Zero” is the new UNAIDS strategy
for the period 2011-2015. It provides the
framework for the global response towards HIV which calls for a
global
transformation. The strategy puts HIV prevention efforts at the
forefront of the
most effective development practice by supporting a renewal of
HIV prevention
in synergy with expanding treatment access, focus and rigour in
programme
implementation and country ownership that enables HIV responses
to set the pace
in creating resilient, equitable and inclusive societies.
The ultimate goal is to stop new infections, discrimination and
AIDS-related
deaths by achieving universal access to effective HIV
prevention, treatment, care
and support.
2.3.1 HIV/AIDS prevention strategies
The UNAIDS 2010 report on the global AIDS epidemic confirmed the
link
between declining new HIV infections and changes in behaviour
and social norms
together with increase knowledge of HIV. However, despite the
availability of a
number of prevention tools which have proven cost-effective
(Bertozzi, 2006)
many existing national prevention strategies are still made up
of a collection of
disconnected interventions which lack clear objectives and
integrated approaches
(UNAIDS, 2009; Bertozzi et al., 2008). Too often prevention
efforts focus on
reducing individual risk with fewer efforts to address
structural factors - socio-
cultural, economic, political, legal and other contextual
factors— that increase
vulnerability to HIV (Gupta et al., 2008). Recent analytical
studies have identified
a number of weaknesses in existing prevention efforts (The
Lancet Series on HIV
Prevention, 2008).
Zero discrimination.
Zero new HIV infections.
Zero aids-related deaths
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Chapter 2 - Global epidemiology of HIV
18
To overcome these weaknesses, HIV research and programme
experts, civil
society and policy makers began in recent years to unite behind
the broad concept
of “combination prevention.” This is not a new approach but
evidence has shown
that despite being widely endorsed in the AIDS policy discourse,
it was rarely
implemented. “Combination Prevention” is now pushed forward as
the best
approach for generating significant, sustained reductions in HIV
incidence in
diverse settings and ensure that every country moves closer to
UNAIDS’ global
vision – Zero new HIV infections, Zero discrimination and Zero
HIV related
deaths (UNAIDS, 2010).
The goal of “combination prevention” strategy is to reduce the
transmission of
HIV by implementing a combination of behavioural, biological,
and structural
interventions that are carefully selected to meet the needs of a
population.
Combination prevention programmes operate on different levels
(e.g., individual,
relationship, community, societal) to address the specific, but
diverse needs of the
populations at risk of HIV.
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Chapter 2 - Global epidemiology of HIV
19
Box 1 Definition of Combination Prevention (adapted from UNAIDS
2009)
The UNAIDS Prevention Reference Group agreed in December, 2009
that combination
prevention programmes are:
... rights-based, evidence-informed, and community-owned
programmes that use a mix of
biomedical, behavioural, and structural interventions,
prioritized to meet the current HIV
prevention needs of particular individuals and communities, so
as to have the greatest sustained
impact on reducing new infections. Well-designed combination
prevention programmes are
carefully tailored to national and local needs and conditions;
focus resources on the mix of
programmatic and policy actions required to address both
immediate risks and underlying
vulnerability; and they are thoughtfully planned and managed to
operate synergistically and
consistently on multiple levels (e.g. individual, relationship,
community, society) and over an
adequate period of time. They mobilize community, private
sector, government and global
resources in a collective undertaking; require and benefit from
enhanced partnership and
coordination; and they incorporate mechanisms for learning,
capacity building and flexibility to
permit continual improvement and adaptation to the changing
environment…
Nearly 20 years of evidence strongly suggests that prevention
strategies are most
effective when they are tailored to the nature and stage of the
epidemic in a
specific country or community (Bertozzi et al., 2006). Thus the
starting point for
“combination prevention” programming is a timely, thorough and
evidence-
informed understanding of one’s HIV epidemic and the response.
This approach is
often referred to as “Know Your Epidemic/Know Your Response”
(UNAIDS,
2007).
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Chapter 2 - Global epidemiology of HIV
20
2.3.2 HIV/AIDS treatment, care and support strategies
The main goal of the treatment, care and support strategy is
achieving universal
access to treatment for all eligible individuals.
Africa, especially the southern and eastern regions, has been
and remains
disproportionately affected by the HIV epidemic. Until quite
recently, the
international response to HIV in Africa has focused upon
prevention of sexual
transmission, with little emphasis upon providing equitable
access to effective
HIV prevention and care services. This emphasis on prevention of
sexual risk
behaviours over equitable care has shifted in recent years.
In 2003, the World Health Organisation (WHO) proposed an
ambitious initiative
to deliver antiretroviral therapy to 3 million persons living
with HIV infection in
resource poor areas by 2005 (the '3 by 5' initiative). This
target was not achieved
although some progress was made. In 2006, the international
community set up
another target that aimed for universal access to HIV
prevention, treatment and
care by 2010. This target was neither achieved and, in 2011, the
goal of universal
access was recommitted in the new 2011-2015 global health
strategy (WHO
2011).
To achieve universal access there are two main strategies. One
focuses on
renovating approaches such as (i) developing easier, more
affordable and effective
treatment regimens; (ii) adopting innovative service delivery
models that reduce
costs and empower communities to demand and deliver more quality
equitable
care services and (iii) joining efforts between health and
community services. The
other focuses in the strengthening of national and community
systems to
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Chapter 2 - Global epidemiology of HIV
21
decentralise and integrate services. As the majority of care and
support is
provided by families and communities, strengthening community
systems is the
main focus. (Haregy 2003)
It is important to stress that HIV prevention and treatment are
interdependent and
mutually reinforcing (UNAIDS, 2006b). There is increasing
evidence showing
that treatment scale-up play a vibrant role in HIV prevention
(Granich et al., 2009;
Montaner et al., 2006; Wawer et al., 2005). Recently a study
from Vietnam has
provided evidence that the “combination prevention” strategy
with targeted HIV
testing and early antiretroviral therapy has the potential to
virtually eliminate new
HIV transmissions in Vietnam (Kato et al, 2013).
2.3.3 HIV/AIDS social structural strategies
“Universal access means more than ensuring that those who need
treatment or
prevention services receive them. It implies an extra effort to
reach those who are
marginalized, criminalized or disenfranchised.”
Secretary-General Ban Ki-moon
“Combination Prevention” put more attention on social and
structural factors that
may increase HIV vulnerability or reduce the reach and impact of
prevention
programmes. In addition to documenting trends and patterns in
incident HIV
infections and identifying determinants “combination prevention”
also requires
the analysis of available research concerning the social,
cultural, economic and
political forces and conditions that contribute to HIV
transmission (Boerma &
Weir 2005). At the heart of social structural perspective is the
recognition that
behaviour is more than merely a personal choice. Social
structures, institutions
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Chapter 2 - Global epidemiology of HIV
22
and norms provide potential for and impose limitations on human
agency and
action.
Structural interventions are activities designed to alter
specific environmental
features – such as inequitable gender norms, or HIV-related
stigma– so as to
create a more enabling environment for HIV prevention, treatment
and care and
support. For reviews of the extensive literature and
perspectives on the importance
of environmental conditions for HIV programmes (see Auerbach et
al. 2009).
Structural interventions differ from many public health
interventions in that they
locate the cause of public health problems in contextual or
environmental factors
that influence risk behaviour and other determinants of
infection or morbidity,
rather than in characteristics of individuals who engage in risk
(Blankenship et al,
2006). Example of these interventions include community
mobilization to support
human rights, or policy dialog and action to increase food
security which benefit
the overall access to HIV prevention, treatment, care and
support (WFP 2008,
Save the Children, 2004). Other means of ending the HIV-related
stigma and
discrimination and gender inequality are enforcing laws,
policies and programs
against discrimination. Other examples are creating legal access
to free sterile
injecting equipment without fear of arrest, making contraception
available free of
charge and ensuring that they can be accessed discretely to
reduce fears of social
disapproval. To do so country capacities to create protective
social and legal
environments, and to include gender issues in the design,
delivery and monitoring
of health services need to be strengthened (Haregy 2003).
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Chapter 2 - Global epidemiology of HIV
23
2.4 Main challenges in HIV control
Advances toward universal access to treatment, care and support
services have
reached significant success in 2009, especially given the
considerable challenges
that accompanied the flattening of global funding for HIV
programmes in low and
middle-income countries. By the end of 2011, ten low- and
middle-income
countries2, including Zambia, achieved universal access (UNAIDS
2012).
2.4.1 Integrating prevention and treatment
The practicability of rolling out successful large-scale
treatment programmes is
threaten by cost-related problems, health system constraints,
ethical
considerations and social cultural barriers involved. Increased
treatment coverage
is not a substitute for other preventative measures that have
been proven to work
in reducing new HIV infections (Van Damme, 2006). Prevention
programmes
must be expanded alongside treatment programmes.
2.4.2 Financing HIV treatment
In 2010, WHO launched revised treatment guidelines (2)
recommending earlier
initiation of antiretroviral therapy, at a CD4 count of
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Chapter 2 - Global epidemiology of HIV
24
China and some countries in Eastern Europe such as Romania and
Ukraine (WHO
2011).
Scaling up “Universal access to treatment” inevitably requires
greater initial
spending. Overall costs of providing HIV treatment will increase
as countries
scale up treatment, adopt the new WHO guidelines on earlier
initiation of
antiretroviral therapy, provide safer but more expensive
regimens and respond to
the growing need for second- and third-line treatment (WHO
2010). Additionally
the non-drug costs of delivering antiretroviral therapy remain
high, accounting for
up to 60% of the overall costs of treatment (UNAIDS 2010). The
main challenge
lies in increasing the availability of treatment in
resource-limited countries which
usually have a weak infrastructure, limited human and financial
resources, and
poor integration of HIV-specific interventions within broader
maternal and child
health services.
Also of concern is the cost implication of the longer treatment,
although this
increase may in part be offset by the reduction in morbidity
following initiation of
ART. However in resource-limited countries many ART regimens
still include
thymidine analogue NRTI known as not too well tolerated
(Renaud-Thery, 2007;
Sungkanuparph 2007; Boyd 2007). Scientific evidence has shown
that it is
difficult to maintain optimal adherence to drugs that cause
unpleasant side effects
so some patients are likely to develop resistance and require a
change in their
regime. Recent studies in resource-limited settings suggest
there will be an
ongoing need for expanded ART options in third-line therapy. The
proportion of
patients on second-line ART in resource-limited settings is
estimated between ~1-
5% (Renaud Thery 2007; Egger 2009; Pujades-Rodriguez 2008).
Estimates of
http://www.avert.org/aids-russia.htm
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Chapter 2 - Global epidemiology of HIV
25
failure on first-line NNRTI-based regimens range between 18-32%
(Ramadhani
2007; Keiser 2008;
Bartlett 2009). Since many of the resource constrained settings,
which usually are
the most affected by the HIV epidemic, are not yet able to offer
third line
regimens, outside the private sector, for some non-adherent
patients this could
mean the exhaustion of all available therapeutic options and
could have the effect
of accelerating mortality rather than delaying it..
2.4.3 Improving Human rights and gender equality
Expansion of testing also has prompted debates within the
bioethics and human
rights literature (Bayer & Edington 2009; Obermeyer 2013).
The main concerns
are related to threats of the fundamental rights to counseling,
voluntary informed
consent and confidentiality. Questions raised are whether
confidentiality would be
protected in overstretched health facilities, whether clinical
settings would provide
adequate post-test counseling and linkages to treatment and
whether benefits
would outweigh the risks of adverse consequences such as stigma,
rejection and
spousal abuse such as domestic violence (Kippax 2006; Monjok et
al., 2010).
Recent research and experience in programme implementation
emphasizes the
importance of actively engaging men in addressing negative male
behaviour and
changing harmful gender norms such as early marriage, male
domination of
decision-making, intergenerational sex and widow inheritance
(Ringheim &
Jacobs, 2009; Barker, 2007). In sub-Saharan Africa, 60% of the
people living with
HIV are women and girls (Garcia-Calleja et al., 2006; UNAIDS
2008), but most
funding dedicated to women provides antiretroviral therapy to
prevent vertical
transmission. It is essential to combine HIV-related funding
with other resources
to address the full range of women’s vulnerabilities, such as
programmes for
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Chapter 2 - Global epidemiology of HIV
26
discordant couples, young women and female sex workers and for
changing
harmful gender norms and economic disempowerment.
Other hot topics discussed are how to balance HIV-positive
persons' right to
confidentiality with the need to prevent transmission to others
and to diagnose
partners living with HIV (Obermeyer et al, 2010), and how to
ensure equitable
access to testing and treatment for those who face barriers to
testing and care in
sub-Saharan Africa, particularly most at risk groups (Mitchell
et al., 2010).
Protective social and legal environments are essential to reach
universal access to
HIV prevention, treatment, care and support. However, in 2008,
too many
countries still did not have laws prohibiting discrimination
against people living
with HIV. Nearly two thirds of countries reported policies or
laws that impede
access to HIV services by certain populations, such men who has
sex with men,
injection-drug users and sex workers including minors (UNAIDS
2010).
2.4.4 Linking persons to treatment
Before people can be treated they need to know they are
infected. Encouraging
more people to test for HIV before having symptoms has proved
extremely
challenging. Recent data shows that many HIV-positive people
wait too long to
seek treatment, usually with CD4 count below 200 cells/mm3
(ART-LINC 2010).
This limits the overall impact of HIV treatment programmes
(UNAIDS 2010).
Furthermore, adherence and retention in treatment, remains a big
challenge in
many settings. A recent study from South Africa reported that
among persons who
receive a HIV positive result, one-third to two-thirds never
return for follow-up
care (Basset et al., 2008; Basset et al., 2009). Furthermore a
recent systematic
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Chapter 2 - Global epidemiology of HIV
27
review reported that many clinics record high rates of loss to
follow-up (LTFU) -
4% to 39% (even after accounting for mortality following ART
initiation) (Rosen
et al., 2007). These factors are increasingly recognized as
central barriers to scale-
up of ART programs in sub-Saharan Africa.
Some of the most important difficulties in linking persons
living with HIV to
testing and treatment and retaining them in care are related to
quality of the health
system services and to organizational problems. The most
commonly reported are
the lack of health services near to the population who need
them, inadequate
organization and management of the health service, limited
number of qualified
health staff, restricted budget, unreliable supplies of
antiretroviral and other
materials, badly organized referral systems and wrong
administrative procedures
such as record keeping that is not confidential. Other barriers
mentioned are lack
of clear and transparent policies and limited involvement of the
community in the
program planning process (for a global overview, see: UNAIDS
2003). Several
studies have found that the perceived quality of the healthcare
system play an
important role on the decision making to access HIV/AIDS
services (Mohseni
2007; Gilson 2003). In Zambia, for example, a major issue is the
failure of many
healthcare providers to guarantee confidentiality. Many people
do not access
HIV/AIDS services or travel long distances to other centres
located in other
communities (making it difficult to maintain long-term
adherence) because they
don't trust the health workers in their community clinic. Fear
of involuntary
disclosure is a serious concern since it could raise marital
conflicts and divorce –
with all its implications for the material survival of an
individual and his or her
family (Merten et al., 2010; Bond & Nyblade 2006).
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Chapter 2 - Global epidemiology of HIV
28
Other widely reported barriers are more related to physical
factors. Long travel
distances to the clinics without adequate vehicles in terrains
that may be difficult
to cross due to rainy season or hilly geography and/or unsafe
journeys due to
warfare or crimina